Wednesday, January 28, 2015

Katie is walking so well (for her) that at school they put a helmet on her and pretty much let her go -on safer surfaces, not on concrete. Occasionally she will be sporting a small bruise on her knee from falling at school. What can I say... my kid is not the cautious, graceful type. I never thought of it this way until now but she is basically a loud, lover of wrestling, tomboy who can't get enough pink and Frozen.

Katie had about six bruises on one knee recently and it just looked terrible. The teacher she said she sometimes falls on the soft playground and that is what she thought it was from. They watched her like a hawk for a few days until I got these cool knee pads. They remind me of those old sweatbands people used to wear on their wrists (maybe they still do?) and why am I picturing Will Ferrell? Oh yes! Just like this!

These knee pads can go right over her knees, tights, or pants, and are very cute! So far this seems to be working and she has no new bruises. I tell you I don't know what I would do without the internet and Amazon. www.kneebees.com

Thursday, January 8, 2015

My title "Guinness" is not referring to the beer, but the Book of World Records. Is that even around anymore? I remember looking at it as a kid and being amazed at the longest fingernails. I must have looked at those for hours. But really, who would grow them that long? Oh my - I guess these people! I just Googled it and here they are. Why would you do this? Ok, so I totally got derailed here, but why are hers straight and his all curly? I wonder if she combs her hair with them?

Is this creepy or what?!

So we have no fingernails like this in any of my family, but my referring to the Guinness Book is that Katie should be in it! You've never seen anyone rip presents open so fast. Lightning speed, grabbing presents left and right, hers, mine, Paul's. So much so that I had a hard time keeping track of who gave who what, and then ended up thanking my Step-Mom for a present my Mom gave Katie. No big deal, at least they all get along. But I am counting this as a milestone. If you have kids you know exactly what I mean. Hey, 8 years-old and first time she is really excited about Christmas presents - milestone in my book!

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Katie's Story!

Read our story on the ViaCord website - click on the picture above

welcome to my blog!

Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.

We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.

What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!

I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!

04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!

about Katie

Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!